JFJ wants law to tackle unauthorised HIV status disclosure
Published:Wednesday | July 23, 2025 | 12:12 AMEdmond Campbell/Senior Staff Reporter
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Suffering the pangs of emotional distress after discovering she had contracted HIV from a man she was cohabiting with over a period of time, a distraught woman, who asked to be identified only as Anica, visited a medical facility, which confirmed...
Suffering the pangs of emotional distress after discovering she had contracted HIV from a man she was cohabiting with over a period of time, a distraught woman, who asked to be identified only as Anica, visited a medical facility, which confirmed her worst fears.
As if that was not bad enough, Anica’s anguish was exacerbated by members of her own family, who, during disputes or quarrels, trumpet her HIV status to the community in which she lives to heap shame on her.
“Mi have two brothers. When mi and dem cuss, dem say, ‘Galang gal! You have AIDS’,” she told The Gleaner.
The stigma attached to persons living with HIV/AIDS is still pervasive in Jamaican society despite public-education programmes to sensitise the country about the disease.
“For years, I withheld it from my sister, and then one day, I just came out and told her,” Anica disclosed.
Anica has gone through counselling and is now on medication to treat the disease. However, despite overcoming the anger and bitterness bottled up in her, she still has to cope with and face those in her community and family who weaponise her HIV status.
LEGAL RECOURSE
“I had so much scars, I didn’t know I could come through the process,” she said, adding that she turned to Jamaicans for Justice to determine whether she had any legal recourse to deal with persons who publicly disclosed her HIV status.
In its 2024 annual report, JFJ said it documented more than 70 cases of unauthorised HIV status disclosure over the period 2020 to 2023. The human rights body argues that this erodes privacy and fuels stigma, especially for women.
JFJ said it was able to collect the data as a result of partnerships with agencies that provide HIV-related services to the most vulnerable population in the country.
Mickel Jackson, executive director of Jamaicans for Justice, said about 70 per cent of the unauthorised disclosures of HIV status have been experienced by women.
“It is sometimes tied to issues of domestic abuse, or you may find that a woman may try to get a maintenance order for the child, and the partner would say, ‘I am not going to be giving you any money’,” she said.
Jackson said the insistence by the woman to take the man to court for child maintenance sometimes leads to a situation where the man threatens to disclose her HIV status.
“So it’s normally those types of issues where the woman’s status is weaponised,” she said.
In another situation tied to domestic abuse, Jackson said the “ex-partner went into the female’s phone and searched for every single man he could find and shared pictures of her (HIV) medication. He said, ‘If I can’t have you, nobody else should’.”
Jumoke Patrick, executive director of the Jamaican Network of Seropositives, said in 2024 that of the 88 cases of unauthorised disclosure documented by the Jamaica Anti-Discrimination System for HIV, 31 per cent were in relation to disclosure of HIV status.
He said the disclosure is largely community-based, where someone may spot a person with HIV at a healthcare facility and go back to the community and share the information.
INADVERTENT DISCLOSURE
Patrick said healthcare workers sometimes inadvertently disclose the HIV status of persons who visit the facility.
“For example, coming into the waiting area and calling a patient’s name and even following up by saying, ‘Why are you here today? I thought you would come next week’ and your results come back and you are virally suppressed.’ So they will say things without recognising that they are disclosing persons’ HIV status.”
He said the disclosure, whether intentional or not, could negatively impact an HIV patient’s adherence to treatment and potentially lead to withdrawal from getting care.
“We have seen that in Jamaica, where even though we have over 90 per cent of people knowing that they are HIV positive, when you go to those that are in care, the numbers reduce significantly,” he said.
When it comes to those who are virally suppressed, the numbers also reduce significantly, said Patrick, noting that there are only 46 per cent of persons with HIV who are on treatment and in care whose viral load is undetectable.
“We continue to see a falloff along the treatment cascade because a big part of it has to do with confidentiality, privacy, and disclosure issues from the stigma index of 2020,” he said.
According to the 2020 stigma index, more than 53 per cent of persons who are HIV+positive “feel dirty, ashamed and worthless because of their HIV status”.
He said persons have travelled from Westmoreland to Kingston to seek HIV treatment because of the fear of disclosure and privacy issues.
“We still operate in a culture where we shame people if they are HIV+positive,” Patrick said, noting that the fear of disclosure pushes people away from treatment, “prevents people from accessing treatment, and in some cases, people prefer to die rather than go on treatment.”
Jackson said that where unauthorised disclosure occurs within institutional settings, the Data Protection Act would be sufficient because a person’s health information is protected under that legislation.
With no specific legal penalties and the Data Protection Act ineffective in domestic settings, JFJ has called for amendments to the Domestic Violence Act to recognise this as psychological harm and for anti-discrimination laws to protect persons living with HIV.